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- Thu Feb 23, 2006 10:27 am
Hello. I am a 21-year-old female, no medications, no past surgeries, diagnosed with interstitial cystitis (doctor no longer thinks I have it though) and pelvic floor dysfunction (doctor thinks I have this instead). Treated with physical therapy in the past year, no change in symptoms.
The issue I am writing about does not seem to be related to the above conditions, and my urologist and general physician have not really been able to answer this question. (Note that though I have been dxed with IC in the past, I urinate less than 8 times/day, do not have IC-like urgency, etc. Basically no IC symptoms. And, my pelvic floor symptoms are mostly pain w/sex and a strange pulling feeling sometimes after urination. This issue seems to be completely separate, please let me know if I should be posting elsewhere.)
I am a deep sleeper and do not often wake up in the middle of the night to urinate. When I wake up in the early morning with a seemingly full bladder/really needing to urinate, in addition to that “full bladder” sort-of painful feeling of needing to go, I have strong pain throughout my entire midsection and stomach. Strong pain. When I describe it to others, I say it’s the feeling as though something hot and painful has leaked into various parts of my stomach and abdomen, and no one can seem to relate with this feeling. It is usually at least partially relieved with urinating but usually the pain persists in a lesser degree for anywhere from 5 minutes to several hours (for example, as I write this, I’ve had this feeling since 7 a.m. and it’s now almost 10:30 a.m.).
Sometimes the pain is somewhat relieved with gas, but only to a small degree. It eventually goes away but due to the severity of the pain I do not want to just ignore it. I have found that setting an alarm or having my husband wake me up to urinate once in the middle of the night helps – as when I do not need to urinate very badly in the morning I don’t have this problem. I can remember having this problem for more than a few years, but only now has the pain been this severe.
Please respond with any thoughts or questions. Any responses are much appreciated. Also, I doubt this is helpful, but I recently started taking calcium supplements because my stomach seems to be less tolerant of milk (pain didn’t start or change upon starting the supplement), and also, I will also be posting a question about lupus, as two different doctors have suspected lupus, as my blood tests positive for it and I have some other indicators but not enough to diagnose me with it. And, I have also had a very low white blood cell count in the past, just thought I should note these things. Thank you very much for any comments you can provide!
| R. Zein, Pharm D
- Thu Feb 23, 2006 5:55 pm
Hope you are feeling better .
Its not uncommon for patients with lupus to have bladder problems, or problems during urination. In fact it is estimated that half patients with lupus have kidney related problems.
You said that your doctor thought it could be lupus. my question is : Did you have any testing done for antibodies to SR protein.
Basically, there is a test that detects antibodies to so-called SR proteins. Antibodies are compounds made to target a particular protein when the body launches an immune attack. And lupus is considered to be an immune disease.
Recent research data found that patients with lupus tend to produce what is called antibodies to SR proteins, which many patients with other diseases are less likely to produce. Some how this test made it easier for doctors to diagnose patients with lupus, since it can be confused with many other diseases..
the other possibility could be that in fact it is due to your IC condition (and painful bladder syndrome).
In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.
If that is the case, there are some pharmacological and non pharmacological treatments: these include:
Pentosan polysulfate sodium (Elmiron), this drug was approved by the FDA in 1996, and it was the first oral drug developed for IC. During the clinical trials, the drug improved symptoms in 30 percent of patients treated. It is still unclear of how exactly this drug works, but one theory is that it may repair defects that might have developed in the lining of the bladder.The FDA-recommended oral dosage of Elmiron is 100 mg, three times a day. And it may take few months to relieve the sympoms.
Elmiron's side effects are limited primarily to minor gastrointestinal discomfort.
Other drugs used are advil, otc drug to help ease some of the pain.
Additional non pharmacological treatments include transcutaneous electrical nerve stimulation (TENS). When it comes to special dieting, there is really no scientific evidence linking diet to IC / PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners.
Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. However, maintaining a varied, well balanced diet is important.
Finally, some stretching excercises and bladder training might be beneficial in many cases.
Thank you very much, and i wish you all the best. Please let me know how things go with you, and / or if you have additional questions.
- Thu Feb 23, 2006 7:14 pm
Thank you for your quick repsonse and for the helpful information. About the lupus testing, my doctor said I had a positive ANA, and that, combined with my various bone/joint/etc pains led to wondering if it might be lupus, but he said I didn't have enough other indicators for a diagnosis.
About the IC, I have so few IC symptoms that my urologist no longer thinks it is IC. He thinks it is just a pelvic floor muscle problem, so I'm concerned that if the symptom described above is not due to lupus (which I really hope that it is not), and not due to IC, then what else it could be. No one seems to be able to relate to this stomach/all throughout abdomen pain that I feel in the morning, not even others with IC that I communicate with on an IC message board. Please let me know if there are any other issues you think this symptom might point to, and whether you think that it is something I should be concerned about. Thanks again!
- Thu Jul 29, 2010 12:56 am
I have exactly the same problem like Gesjad01. I do not have lupus. Can someone helps me what wrong with me. Doctor said I have IC but i did not have same symtom like Ic , only pain in the morning after urinate. My muscle around bladder area pain